Questions submitted by readers and answered by the CLL Society Medical Advisory Board
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
By Thomas E Henry III, MBA, RPh, CPh
I just started on Venetoclax. Ramped up to 400 mgs with no TLS. Was told to take the medicine “with a fatty meal”. When I asked what constituted a “fatty meal” (a yogurt? a ham and cheese sandwich? a pat of butter on a piece of toast?) no one could give me an answer. How much fat, and what kind, do I need to consume when I take my venetoclax?
Tom Henry, our pharmacist provided this answer: Because Americans have been told to avoid fat to stay healthy, many people avoid fat at all costs. In a study that was reported in the American Journal of Clinical Pharmacology, in November 2016, it was shown that venetoclax reached higher levels when taken with either a low-fat or high-fat breakfast. The final recommendation of that study was that it was critical to take venetoclax with food that there should be no specific recommendations on the fat content of the meal that patient consistently takes their dose.
This is similar to initial guidance that came out relative to ibrutinib that it be taken on an empty stomach which once studied clinically was shown to be irrelevant to the effectiveness of the drug.
I would add that I am glad you did well on the venetoclax ramp up.
My husband started on Calquence a week ago. He was cautioned about not eating/drinking grapefruit and blood oranges. He is wondering if regular orange juice is ok.
Here is the answer from Tom Henry, our pharmacist: There is a definite contraindication between Ibrutinib and grapefruit or Seville oranges. Seville oranges are used to make orange marmalade but generally not used for juicing or eating. I was not familiar with Blood oranges and looked them up and while they too are used to make marmalade, I could find no reference that Seville and Blood are the same. If your CLL provider warned about Blood Oranges then I would avoid them in addition to all grapefruit and Seville oranges.
To be 100 percent confident in “regular” orange juice, you should probably consider squeezing your own or getting it from a store that squeezes it on the premises and lists the type of orange used.
Hope this helps!
My iron is getting low, and so I have been taking iron supplement. But when recently tested, my iron went DOWN and my ferritin went UP. Should I stop supplementing?
Here is the answer from Tom Henry, our expert pharmacist: Ferritin is an inflammatory marker so it can rise and fall with inflammation, cancer and infections. It is helpful when it is low. Less so when high.
Your doctor should look at your red blood count indices, your serum iron, percent saturation, total iron binding capacity (TIBC) and soluble transferrin levels and from that, be able to tell whether you need iron or not. Ferritin is less reliable.
What are the guidelines for pneumonia jabs for CLL patients? I understand that we should have two, two months apart. Is this correct?
Here is the answer from Tom Henry, our expert pharmacist: There are currently two pneumococcal vaccine products available, Pneumococcal Conjugate Vaccine (PCV13) that is marketed as Prevnar-13 and Pneumococcal PolySaccharide Vaccine (PPSV23) marketed as Pneumovax-23. The Advisory Committee on Immunization Practices (ACIP) currently recommends the administration of Prevnar-13 alone in infants under 5 years of age. Their guidelines state that those between 5 and 65 who are otherwise healthy not receive pneumococcal vaccination. In patients over 65 the recommendation is that patients receive both products if they have never had any pneumococcal vaccination. Prevnar-13 is a once a lifetime inoculation. If an immune competent patient received a dose of Pneumovax-23 prior to age 65 they should wait at least 1 year before receiving Prevnar-13 and receive a second Pneumovax-23 at least 1-year after Prevnar-13 and 5-years after the last Pneumovax-23.
There is an exception for patients greater than 5 who are immune-compromised (which is which is associated with the disease of CLL and also part of chemotherapy treatment of CLL). These patients should receive Prevnar-13 first (if they have no history of receiving in the past) followed by the Pneumovax-23 product a minimum of 8-weeks later.
I would add it’s the last paragraph that applies to us.
I have recently started treatment with Calquence. A patient information leaflet states “Do not use aspirin, ibuprofen or naproxen for regular aches and pains.” I have severe hip pain and am taking Advil approximately 4 times daily. Please advise if I should discontinue, and if so, what is an alternative for pain control.
I am also on a low dose aspirin therapy 3 days a week. Should I discontinue while on Calquence?
Here is the answer from Tom Henry, our expert pharmacist: Acalabrutinib (Calquence) is a Bruton’s Tyrosine Kinase Inhibitor (BTKI). All BTKI products have been shown to inhibit platelet aggregation which is portion of the clotting mechanism. The risk of bleeding, potentially serious in some cases is worsened when a BTKI is used in conjunction with another drug that has anticoagulant properties such as a Non- Steroidal Anti-Inflammatory Drug (NSAID) such as Naproxen (Alleve) or Ibuprofen (Advil).
You state that you have issues with hip pain. I see two potential options for this pain. The first would be acetaminophen (Tylenol) 625mg up to 4 times a day. Acetaminophen unfortunately does not address the underlying inflammatory process that often contributes to joint pain. If a trial of acetaminophen fails, then I would suggest you ask your physician or CLL specialist about the advisability of taking a Cox II Inhibitor drug such as celecoxib (Celbrex) which is a more selective type NSAID which has purportedly less anticoagulant effect. If the hip pain is severe enough, you may want to consider hip replacement surgery. I had my left hip replaced in 2017 after being diagnosed with CLL and while on treatment with Ibrutinib, another BTKI. You just need to have the orthopedic surgeon and your CLL doctor agree on how you would taper down or stop the Calguence before surgery and when you would resume it after surgery. In my case we tapered prior to surgery with original dose of 420mg per day down to 280mg/day for 3 days, then 140mg/day for 3 days and then nothing for 3 days. Because my orthopedic surgeon would normally start aspirin on first day after surgery they restarted my Ibrutinib on that day so I only had 4 days with no ibrutinib.
I would suggest you stop the low dose aspirin (81mg). The Calquence provides about the same anticoagulant activity as a full strength (325mg) aspirin tablet so it essentially is duplicative.
This is a complicated topic and different doctors will take different approaches. Some would stop the BTKI 1 week before.
There also nonpharmaceutical approach to hip pain management that your ortho can discuss. Also steroid shots are another option, but they have their own risks and would likely involve holding the acalabrutinib too.
As we said complicated.
I have water infection and take ibrutinib tablets can I take cranberry juice? Or could you advise me please? Thank you.
Here is the answer from Tom Henry, our pharmacist: I am assuming you mean a urinary tract infection? Not only can you take cranberry juice but, it may be beneficial as it acidifies the urine which helps kill bacteria. You may also need an antibiotic so a call to your primary doctor is probably a good idea.
To that I would add that cranberry juice may prevent bacteria from adhering to the bladder wall. That said there is controversy about its value in fighting urinary infections.
I will be doing the obinituzumab/venclexta treatment starting this year. Can you recommend a Prescription D Drug plan? I am having so much trouble deciding.
Answer: Medicare Part D can be confusing, but Medicare.gov can help by allowing you to put in which drugs you are on and giving you the cheapest option.Start here: https://www.medicare.gov/drug-coverage-part-d and choose what would be most helpful.
To actually check on the cost, try here and answer the questions:
Thomas Henry is a Registered Pharmacist and CLL Patient. He is President and Senior Consultant for Burlington Consulting Associates, a company that provides consulting services to health systems nationwide. Tom is a CLL Society Medical Advisory Board member and strives to educate other CLL patients through his blog https//www.cllpharmacist.com. He has a forty-two-year career in pharmacy and has served as Chief Pharmacy Officer at two Top-15 Comprehensive Cancer Centers, Moffitt (Tampa, FL) and Roswell Park (Buffalo, NY).
Originally published in The CLL Society Tribune Q4 2019.